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Thursday, January 3, 2013

Update on latest clinical trial : FSGS Sucks

Do you have any idea how hard it is to keep everything straight in regards to my health care. I mean, I'm amazed that I'm able to do it as well as I am (which isn't all that great lately).

I just got a call from Mayo for the latest clinical trial that I'll be participating in. Seems like I'll be going on February 21 in order to do a follow-up for the FONT study (which is the 5-year study that I had to back out of due to abnormal pap results), as well as get consented for the newest clinical trial (whatever that means).

Once I'm consented, I'll need to do 2 first-morning voids, as well as have the pharmaceutical company that's sponsoring the study review my biopsy slides to confirm my diagnosis of FSGS.

First of all, do you have any idea how hard it is to get biopsy slides??? It's nearly freaking impossible!!! Annoying that I can't get my own tissue samples, isn't it? Sort of like it's annoying that I can't get lab results through the lab, but rather have to wait for them to be seen by my doctor first before I can get them. IT'S MY BLOOD....MY TISSUE....and always my hassel.

I think Mayo already has my slides from when I started my care there back in March. At least I hope they do, because IU Med Center has them, and they're pretty stingy about releasing them, which equates to more delay.

Today is one of those days that I'm completely tired of it. Tired of keeping it all straight, tired of the hassel, tired of all the work. Just tired. Literally, mentally, physically tired. Do you know that I took a 10 minute nap in my car this morning in the parking lot of work before I went in because I COULD NOT stay awake? I had a full 8 hours of sleep last night...I'm off the melatonin too. UGH.

2 comments:

I agree about how obnoxious it is to get copies of records - our local big hospital system has an online option to see your results. Problem is you have to use THEIR labs and doctors, and their labs are not covered by our insurance. (I worked for them for the year I was doctor-free, so I never got to set it up before I left!)

sorry to hear things aren't starting off better for you in 2013 :( Here's hoping things improve for you soon. I know how tired you must feel. I find it frustrating that overall, I look healthy but have to deal with all the side effects from the medicine i take everyday. I think people forget that I'm dealing with a chronic disease.

I suffer from MCD. I relapsed last year after being clean for 5 years. I have not been able to achieve remission... next appointment is next week. I've been on Tacrolimus, 10 mg of pred. and a host of other meds for well over 7 months. My doctors are thinking of rituximab if my protein hasn't decreased. Of course it scares the crap out of me to read some of the side effects. But I am kinda done with the tremors, headaches, diarrhea and feeling crappy all the time.

Anyway, thanks for your blog. It's totally crappy that you have to deal with FSGS everyday but it's nice to know I am not alone in dealing with this disease.